Peyronies Society Forums

Peyronies Disease TREATMENT Discussion Boards => Vacuum Erection Devices (VEDs) for Peyronie's Disease => Topic started by: smithy365 on August 18, 2017, 09:42:36 AM

Title: Question About VED Protocol
Post by: smithy365 on August 18, 2017, 09:42:36 AM
I have read the protocols on the forum, and have had some communication with "old man" and I appreciate it.

But, like everything else, there are so many different opinions about protocol.  Has anyone had any REAL results

a VED or Traction Device?  I am ready to do what I have to do, and I know that its a marathon, but it is hard for

me to commit to something, not even knowing if it is the right protocol. Spending months or even year doing something
that is not going to be effective at all, because it isn't being done the right way seems like a waste of time and money.


One thing that I stumbled on while researching was an actual medical study/trial. In it 51% of the participants had
good enough results in erection quality, curvature, and pain, that they cancelled having surgery.

51% odds, sounds good to me!  I'll take it...at least there is some hope there!

Was wondering if anyone else has experience with the method/protocol that they used?

Read the study for exact details, but basically they slowly pumped to full erection and held it for 3 minutes, and did this for 10 minutes twice a day.

I know that the protocols on here recommend only going to 50% fearing it would be harmful to do otherwise. Now, I understand that you can overpump and cause injury, but if it is ok to pump up to full erection with a VED for ED issues, what is the harm in doing so for therapy? And it seems that there is at least some evidence from the study to support that this worked for some men?

Here is a link to the study The role of vacuum pump therapy to mechanically straighten the penis in Peyronie's disease - Raheem - 2010 - BJU International - Wiley Online Library (http://onlinelibrary.wiley.com/doi/10.1111/j.1464-410X.2010.09365.x/full)
Title: Re: Question About VED Protocol
Post by: blackdiamond on August 18, 2017, 03:24:55 PM
smithy,
I have the exact same question. I know the VED protocol on this board and it is much more conservative than the one my Doc gave me.
I'm waiting for my second round in a couple of weeks to discuss w my Doc........
I too have had communication with "old man" and he seems to have put his heart in this and helping people. If your reading this " Old Man " thank you.......
I have decided to use a combo of my Docs more aggressive approach and the boards less aggressive approach until I get to discuss with my Doc.....
My Doc is well known and was on the board to get Xiaflex approved in addition he said he's done at least 150 patients.....
His Protocol is
                    Pump 3 seconds hold for 10 then release
                    Pump 6 seconds hold for 10 then release
                    Pump 10 seconds hold for 10 then release
                    Pump to fully engorge penis ( stretched feeling, no pain ) hold for 60 seconds
                    Pump to fully engorge hold for 3 minutes then release
                    Pump to fully engorge hold for 5 minutes then release
This to ideally be done twice daily...............I know some folks here totally disagree with this approach but like I said I'm combining the two until I can discuss w my Doc.....
This whole journey is just a blast isn't it ?   
Title: Re: Question About VED Protocol
Post by: smithy365 on August 18, 2017, 10:49:30 PM
If by "blast" you mean totally freakin' sucks....then yes, its a blast ;)

What your doc gave you sounds very close to what is in that study. (The first part of it, just seems like building
up to full erection slowly, which is what I am doing)

I think that I am going to go with that.

Did it once today, and will do it again before bed tonight.

My thoughts are.

1. A record of at least some results...like I said, 51% sounds like good odds to me!
2. I don't think pumping to full erection, a little at a time, like the device instructions prescribe would
be harmful, since it isn't harmful to do so if you needed to for ED
3. If you can pump to a full erection, and hold it for 1/2 hour with a ring (for intercourse)
holding it in the pump for 3 minutes (or even 5, like your doc recommends) can't hurt.
4. Some of the theories suggest that the less aggressive protocols work because of the blood. Seems to me
that this protocol will still have that benefit

So, for now, that is what I am going to do. If nothing else, I'll be a one man test for that particular protocol
and will keep the board posted. (I guess on this thread?)

Let me know what your doc says, and your progress as well. If you don't mind my asking, are you dealing with
a bend or curve, what degree and direction.

I am somewhere between 30 and 45 degrees, never checked with a protractor, but I have a pretty good eye!
Looking down, mine goes to the left, and up. Not sure if it is "usable" as my wife has very odd menopausal issues
so we haven't had intercourse in over 18 months.

Obvious disclaimer: This is just what I am going to do, I am not recommending it to anyone or making
any claim that it is safe.
Title: Re: Question About VED Protocol
Post by: blackdiamond on August 19, 2017, 08:54:25 AM
Will do.......I believe it's a bend and Doc told me it was 75 degrees prior to treatment. Get measured in about 2 weeks just prior to
                 my next round.......Hopefully all this money and hard work pays off...............Again ....Good Luck
Title: Re: Question About VED Protocol
Post by: smithy365 on August 19, 2017, 10:27:15 AM
What do you mean by "round" just between doc visits, or are you having some other procedure as well?
Title: Re: Question About VED Protocol
Post by: blackdiamond on August 19, 2017, 12:58:52 PM
Round means each 2 shot's.........4 rounds 8 shots etc.........not another procedure..You're not missing anything.... :)
Title: Re: Question About VED Protocol
Post by: smithy365 on August 19, 2017, 11:41:48 PM
I did miss something....what shots? Xiaflex?
Title: Re: Question About VED Protocol
Post by: blackdiamond on August 20, 2017, 08:27:49 AM
Absolutely........Xiaflex shots.....I thought you were already getting them.......You really need to look into getting them.....
                       Just read the board.......so much success with it.....Honestly if I weren't doing the shots I probably would't be doing anything.......
                        I've only had my first round ( 2 shots ) so I don't know how much the bend improved until I get measured during my next visit but
                        looking at it about 3 weeks from my 2nd shot it seems to have improved....If you want to do everything you can to improve then you should try Xiaflex.......
           I really can't believe your Urologist never mentioned it....that's if you are seeing a Urologist............If you are then it seems
           that you might need to see another Doc.....If you're not you need to see one and pick one that is knowledgeable re Xiaflex and has done a lot of procedures....
           Good Luck........
Title: Re: Question About VED Protocol
Post by: smithy365 on August 20, 2017, 02:39:02 PM
I was seeing one. He seemed quite knowledgeable, and after colcacine (sp?) didn't work, we discussed the shots. He said that the results were in a small percentage of patients, and then only an improvement of about 10 degrees. I asked him about a pump, and he said that his theory was "why do further injury, to something already injured?"  He offered to do an implant, otherwise pretty much said that there was nothing else to do, and I'd just have to live with it.   Been over a year, I am considering looking into another one. I think I found one close enough to home (not that it matters, I'd drive 1000 miles for a cure!) who is on the "list" on the website for Xiaflex.

I don't know if my insurance covers him, and I don't know if they cover Xiaflex, and if I can afford the deductible.

I am thinking about continuing with the VED protocol mentioned above, and I may also do traction. I have both devices, and both are good quality ones recommended on here (SomaTherapy VED, and X4 Labs Traction)

Hard to know what to do (no pun intended.....ok, maybe it was intended)

Thanks for your input and keep me posted!